Advances in medicine over the past 50 years represent a shining example of the power of combining humanism and science to save lives and foster love. St. John Paul II celebrated these developments and emphasized the need to use them responsibly when he stated in 2000:
Medical science, for all the hope of health and life it offers to many, also presents certain critical issues that need to be examined in the light of a discerning anthropological and ethical reflection.... It is evident that every medical procedure performed on the human person is subject to limits (“Address to the 18th International Congress of the Transplantation Society,” No. 2).
When those limits are followed, medicine can serve its goal of defending and promoting human dignity and, when appropriate, “acceptance of the human condition in the face of death” (“Evangelium vitae,” No. 65).
This brings us to the complicated dynamics of declaring death in an increasingly technologically complicated set of clinical circumstances. The Catholic Church, as always, is offering a significant contribution to this ethical conversation, and we believe it is time to offer clarification in light of some well-intended but misguided advice from voices within the church. Such clarification is based on our collective expertise as members of the clergy, clinicians and ethicists because understanding the issues at hand requires a multidisciplinary approach that is both theoretically and practically well-informed.
The authors and signatories of a recently published document called “Catholics United on Brain Death and Organ Donation: A Call to Action” have condemned the use of neurological criteria for determining that patients have died and the view that it is ethically permissible to recover their vital organs in these circumstances if they or their loved ones have consented to donation. Their statement concludes that Catholics should conscientiously refuse permission for such neurological testing and that Catholic health care practitioners should refuse to use such criteria to declare someone dead. Consequently, they also call upon Catholics to refuse to be organ donors.
First of all, the document’s title is a misnomer. Far from promoting unity within the church, it will undoubtedly create disunity, confusion and even scandal among the faithful. For example, there is widespread public confusion regarding the colloquial term brain death. The use of this term often incorrectly conflates those declared dead using neurological criteria with patients in a persistent vegetative state, like Terri Schiavo, whose death in 2005 followed intense debate both within and outside of the church. Her brother, Bobby Schindler, is one of the statement’s signatories. The misappropriation of the term brain death, even by medical professionals, leaves many vulnerable to being exploited by fear.
Moreover, although the list of signatories includes several health care professionals, we are aware of Catholic neurologists, critical care and transplant physicians, and ethicists working in Catholic health care who were approached and explicitly chose not to sign the document because they adamantly disagreed with it on medical and bioethical grounds. There is an evident lack of insight in the statement regarding the realities of clinical practice and how determination of death by neurological criteria and organ recovery actually works in hospitals. There is a strong difference between theory and practice.
At the centerpiece of the statement is the concern that the current Uniform Determination of Death Act, the model legislation first crafted in 1981 and thereafter adopted by every U.S. state and territory, is being routinely violated because it requires irreversible loss of “all functions of the entire brain.” If, as the statement notes, more than half of patients declared dead using neurological criteria have persistent neuroendocrine function via the hypothalamus, then, they argue, the U.D.D.A. criterion is not being met. However, from the beginning this criterion has never been understood to entail that every single part of the brain must have irreversibly ceased functioning for death to be declared. As neurologist James Bernat and others have argued since the early 1980s, specific critical functions of the brain need to remain intact for a human body to be alive.
If we stipulate that every last neuron in the brain must cease firing before we declare someone dead, we would have to abandon even traditional cardiopulmonary means of determining death and await the onset of putrefaction. This cannot be what St. John Paul II meant when he said, in an address to the International Congress of the Transplantation Society in 2000, “complete” cessation of brain activity is morally required. He said as much himself in that address when he acknowledged that scientific approaches to ascertaining death had “shifted” from cardio-respiratory signs to neurological criterion:
Specifically, this consists in establishing, according to clearly determined parameters commonly held by the international scientific community, the complete and irreversible cessation of all brain activity (in the cerebrum, cerebellum and brain stem). This is then considered the sign that the individual organism has lost its integrative capacity (No. 5).
This has long been the understanding of the U.D.D.A.’s requirement regarding “all functions of the entire brain.” It was always meant to clarify that both the cerebrum and the brain stem must be dead, and that being in a persistent vegetative state does not constitute death.
Does the hypothalamus fulfill a critical function?
Discussions about including the hypothalamus and other parts of the diencephalon in brain death testing were well known at the time of St. John Paul II’s statement in 2000, as well as the “legal clinical mismatch” between what the U.D.D.A. requires for death to be declared by neurological criteria and what is done in clinical practice, where testing for hypothalamic function has never been required for determination of death. Why is this the case? It is because the hypothalamus does not play a central role in preserving the human organism’s integrative unity. The hypothalamus produces hormones related to reproduction and puberty, and it tells the body to manage its fluid homeostasis, temperature, satiety, sleep and blood pressure. These are vegetative functions but not functions fundamental for life in the way that brain-stem-coordinated circulation of oxygenated blood and respiration are.
Indeed, people can live well without a hypothalamus (e.g., after removal from surgery due to a tumor extraction) with exogenous hormonal replacement. The brain’s other structures can be irreversibly destroyed (with no potential for recovery) and the hypothalamus can be preserved because of collateral blood flow from blood vessels external to the brain if organ support is maintained via IV fluids and a ventilator to stabilize blood pressure and oxygen levels. This is similar to medical technology that allows a heart to beat in a box outside the body, as in cardiac transplantation. Clearly a heart outside of a body is not a living person, yet the heart’s tissue and neural pathways can be stimulated to make the heart beat.
Thus, while it is the case anatomically with hypothalamic function preserved that not all functions of the entire brain have ceased, it is the case functionally that patients determined to be dead by neurological criteria “will never regain consciousness or breathe independently again, irrespective of whether neuroendocrine function is present or not.”
If St. John Paul II meant to include the hypothalamus in the above listing for brain death, or similar neuroendocrine structures like the pituitary gland, surely he would have done so. Instead, he went on to say, “With regard to the parameters used today for ascertaining death—whether the ‘encephalic’ signs or the more traditional cardio-respiratory signs—the Church does not make technical decisions” (“Address to the 18th International Congress of the Transplantation Society,” No. 5). The pope here reflects the wisdom of St. Augustine when he warned, in his Literal Commentary on the Book of Genesis, against Christians speaking about scientific matters outside of their expertise, lest they be laughed at and the faith be scandalized (Book I, Chapter 19, Paragraph 39).
We thus come to the crucial question of the role of the hypothalamus with respect to the integrative unity of a living human body. Does the hypothalamus fulfill a critical function in terms of bodily integration, control or behavior? For the reasons outlined above, it is evident it does not. While undoubtedly playing an important role in the vegetative effects of the brain, there is no evidence that hypothalamic function is either necessary or sufficient for the persistent integrative life of a mature human organism.
In fact, it is not substantively different from the function of other endocrine glands like the adrenal glands that lie above the kidneys, yet no one believes testing for adrenal function is relevant for determining death.
Thus, the authors of the statement “Catholics United on Brain Death and Organ Donation: A Call to Action” seem to mistake the hypothalamus’s location as being more relevant than its function. This is why some other legal jurisdictions, such as the United Kingdom, require only irreversible cessation of brainstem function, given its unique and irreplaceable role in preserving and regulating cardiopulmonary function.
It is also worth highlighting, as the statement’s authors note, that assessing hypothalamic function has not been included as a requirement for determining death going back to the 1995 guidelines from the American Academy of Neurology. So why has attention now been drawn to this small area of the brain? One speculative explanation is the increasingly deep-seated attitudes that inform America’s current culture wars, leading to an overarching hermeneutic of suspicion regarding the A.A.N. criteria and the medical profession in general. The scrupulous fear that giving the gift of oneself through organ donation to extend the lives of others will prematurely cause one’s own death ends up fomenting fear, discord and disunity within the church.
The arguments against the use of neurological criteria have yet to prove persuasive to either the medical community or the church’s magisterium after multiple studies in the 1980s and 2000s by the Pontifical Academy of Sciences. Thus, while we agree that the current neurological criteria should continue to be critically examined and refined where needed, and that there needs to be legal and moral accountability to ensure the integrity of how death is ascertained, it is inappropriate to reject the clinical use of neurological criteria altogether and sow distrust between Catholics and their health care providers, as well as Catholic hospitals and society as a whole, by calling for conscientious refusal of neurological determination of death and organ donation.
The potential ramifications of such confusion and distrust are manifold, not only with respect to organ donation—about 2 percent of all in-hospital deaths are declared using neurological criteria; only about 20 percent of the patients declared dead using neurological criteria become organ donors—but more especially regarding family decision-making concerning continued technological intervention to sustain vegetative operations. Rather than accepting the reality that natural death has occurred and maintaining faithful hope in a future resurrection, families may feel compelled to cling to the false hope of their loved one’s technologically mediated recovery, as witnessed in the recent case of Jahi McMath.
Promoting such false hope, by making brain death the latest battlefront in the ongoing culture wars, places an undue burden on families at a time of immense grief when they are most in need of clear pastoral guidance and the healing that comes from accepting our mortality while faithfully acknowledging that death is not final—this is the church’s unified Gospel message.
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Jason T. Eberl is the Hubert Mäder chair in health care ethics, professor of health care ethics and philosophy, and director of the Albert Gnaegi Center for health care ethics at Saint Louis University. He is the editor of Contemporary Controversies in Catholic Bioethics (Springer, 2017).
Becket Gremmels is system vice president for theology and ethics at CommonSpirit Health.
The Most Rev. Michael F. Olson is the bishop of Fort Worth. He is a member of the U.S. Conference of Catholic Bishops’ Committee on Doctrine and serves as the chair of that committee’s Subcommittee on Health Care Issues.
E. Wesley Ely is the founder and co-director of the Critical Illness, Brain Dysfunction, Survivorship Center and the Grant W. Liddle Endowed Chair of Medicine and Critical Care at Vanderbilt University Medical Center and the associate director of aging research at the Tennessee Valley Geriatric Research Education Clinical Center.
The Rev. John J. Raphael is a priest of the Diocese of Nashville, staff chaplain/specialist for Catholic ministry and bedsideethics consultant at Ascension Saint Thomas Hospital West. He is a contributing author to Catholic Health Care Ethics: A Manual for Practitioners (3rd edition, National Catholic Bioethics Center.)
Allen J. Aksamit is professor and consultant in neurology at Mayo Clinic, Rochester, Minn. He has served asthe education division chair in neurology and has subspecialty expertise in neurovirology and neurosarcoidosis. He sits on committees of the American Neurological Association and the American Academy of Neurology.
Laura B. Webster serves as the vice president of ethics in the northwest region of CommonSpirit Health, is an affiliate faculty member at the University of Washington School of Medicine in the Department of Bioethics and Humanities, and is a volunteer community nurse. She worked as a nurse in the neuroICU and the emergency department of a level-one trauma center for over a decade.
The views expressed here are the authors’ own and do not necessarily represent the policy and practice of their affiliated organizations.
